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Old 08-27-2006, 02:11 PM   #1
Rabbit
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Arrow Helpful information for new posters here

Check it out, there's something new (almost) every time!
This message was compiled from the suggestions of a whole bunch of posters. It can be helpful in understanding the information specific to this site.

Here are some abbreviations and terms we tend to use, in no particular order.
AED - Anti Epileptic Drug
Neuro - neurologist
E - Epilepsy
TLE - Temporal Lobe Epilepsy
RTL - Right Temporal Lobe
sz - seizure
CP or CPS - Complex Partial Seizure
SP - Simple Partial Seizure
GM - Grand Mal seizure (now called a tonic-clonic seizure)
TC - Tonic-clonic seizure (formerly called grand mal)
A - Absence seizure
EPI= Epileptologist
dx = diagnosis
JME-Juvenile-onset Myoclonic Epilepsy
Catamenial epilepsy - seizures somehow connected with/related to hormones and the female cycle
VNS - Vagus Nerve Stimulator, an implanted device that can help control/stop seizures
DBS-Deep Brain Stimulation, a form of surgery where a stimulator is put in the upper chest with wires & electrodes attached
to the brain, stopping or cutting back on the amount of seizures.
Deja vu - (deja vu = French: already seen) - a sense of having felt/experienced/done something already.
Jamais vu - sort of the opposite of the above: the sense that NOTHING is familiar (even though it really should be).
JL - John Lester, the great guru who manages the Braintalk forums
CCC - Cut the Coconut Club - refers to a group of members who have had/are considering having brain surgery to correct seizures
VEEG - video EEG - this is where they put you in the hospital for several days (or more) hooked up and watched on camera at all times. Helps in identifying the seizure focus, or in finding seizures a regular EEG did not pick up. Getting the glue out of your hair has been the topic of many discussions here!
AEEG - ambulatory EEG - this is where you are hooked up to an EEG machine that you 'wear', then you go home with it. Usually 24-48 hours.
Neuropsych - Neuropsychological testing - a series of tests (written, oral, manipulation, etc.) which are designed to help understand where in the brain you are processing information. This abbreviation may also mean Neuropsychologist: a doctor specialising in this field.
Kindling - this is a theory that not all neurologists agree on. It says that the brain "learns" to seize, by seizing. You create neural pathways (get better at doing something) by doing something repeatedly, so theoretically the brain gets better at seizing. Under this theory, it is important to stop ALL seizures, not just most.
Auras - the distortions of perception - simple partial seizures that come before a complex partial or grand mal seizure
Ictal - the period of time that is the seizure.
Post ictal - the period of time after a seizure (often includes confusion, sleepiness, exhaustion), which leads us to
Inter ictal - the period of time between seizures
Status (or status epilepticus) - a condition of continual seizures (of any kind) that can be life-threatening and requires emergency attention.

For women mainly: many of the anti epileptic drugs cancel out the birth control pill. Check with your doctors to make sure that you are not going to have any surprises.

In reference to med dosage:
bid - twice daily
tid - three times daily
qid - four times daily
po - orally, by mouth

At the top left of your page it says FAQ -- that's for Frequently Asked Questions. Click there for some really helpful stuff!
And "bump" is when someone thinks the topic is important enough to go up on the list so that everyone else has the chance to comment on the topic (when you reply to a topic, that moves it to the top of the list).

LOL..........laughing-out-loud!
IMHO......... in my humble opinion
BTW.............by the way
ROTFLMAO........rolling on the floor laughing my _ _ _ -off
DH.......Dear Husband (likewise, DD for Dear Daughter, you get the idea)

Smilies - to put smilies IN your message, see the Smiley Legend...To the left of the field you type your reply into;click-on-it and you will see a list of how to make smilies in your messages. Please be VERY careful about using ones that MOVE! They can cause problems for people with sensitivity to moving graphics. You will not see the smiley until you "submit" your message.

Remember that this is a bulletin board, not a chat room. You may not get an immediate response to your question, because members are 'on' at different times of the day (and different time zones!). Allow your question several days, hopefully including a weekend, before you conclude you've gotten all the answers you will get.

Some helpful tips: please try not to write in all capitals, as this is considered "yelling" in the electronic communication world. ALSO it helps readability if you break your post into paragraphs or sections, rather than confronting the reader with a 'wall' of text.

Searching past posts - people new to the forum usually need to know that they can find a lot of information about a question in past posts, if no one's around to answer right away. You can search for either a subject - ie Tegretol, complex partial seizure, status, etc., or for past posts by a specific member, by nickname. Do this by going to the top right hand side of the posts, look under post new topic and click on the search button on the far right.

Graphics - some of the posters and readers here have trouble with moving graphics. If you put them in your thread, please note "Graphics" in the subject line. Likewise if you refer someone to another website with lots of moving graphics, please try to mention that.

Useful Websites - in one of the bands at the top of this page is a "useful websites". This is a compilation of interesting sites specific to Epilepsy. Check it out, and/or add your own to the list. There is an awful lot of information out there!

If I have left anything out, please post a reply to this message, and I will edit to include your information. Thanks to everyone who has made suggestions.
Rabbit
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jnewk (11-12-2013)
Old 09-16-2006, 04:06 PM   #2
Ellie
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Default Tips

Tips For People With Epilepsy & Seizure Disorders
  • Keep a Journal
  • Print out blank anatomy charts (several copies) and buy a nice set of highlighters/Markers
  • Write down each color for each sensation. Example: Red:Sharp Pain - Orange:Tingling - Yellow:Numbness - etc..
  • Keep several folders. One for yourself, one for your Neurologist/Epileptologist, one for any ER doctors you may have to visit, etc.
  • Make SURE you have a MedAlert Bracelet/Necklace or an Emergency Card!
  • Update your Journal daily, at the end of each week - in a new notebook, recap each new concern you may have. This will assist you in communicating with your doctor(s)

What is the purpose of this?

Your journal will be in the format of a seizure log. You can create your own, I have made my own and would be willing to share if you'd like to use the format. Otherwise, you can find many online.

My format has blank spots for the following things:
  • Date: (This is to list the date of the seizure, aura, or any strange/new sensations)
  • Time (This is to write down the time of my seizure, aura, or any strange/new sensations)
  • Duration (This is to mark how long the episode(s) listed above may have lasted)
  • Symptoms (This is to explain in detail about the symptoms)
  • Activities During Episode (This is to list what I was doing at the time or prior to the episode)

What in the world are the anatomy charts and markers for?

Sometimes, as with many people who have Neurological complications - our short term (and sometimes long term) memory isn't a great friend of ours. We may forget important details our doctors need to know. Keeping these charts and 'coloring' the affected areas will allow them to see -visually- what exact areas you were attacked in. Having a journal log attached with this will give them the best idea possible, allowing them to properly diagnose you (if that applies).

As shown in the examples below (You can save these images via -> Right click, save as) - You can have one with a date, or if you'd like to explain via color - just color in each box and add whatever sensation to it's matching color.


[In the image below, you'd color in grey boxes]


[In the image below, this is an example of a finished chart]



-----
Get some paper clips, so that way if you have to use your body charts, you can attach them to the journal you have. I keep copies of my journal - one for my neurologist, one for myself.

I also keep copies of all tests I have had done, and make more copies for each new doctor I see. This saves time and money on medical record requests.
----

Hopefully, this information will help any people who needed a better way to organize their hectic seizure-life!


(Keep in mind on the images, I had to edit them really fast. I keep copies on my desk and color on them as needed, my computer copies aren't as fancy if no time was invested!)

Last edited by Ellie; 02-08-2007 at 12:50 PM. Reason: Re-added Pictures
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Old 09-22-2006, 09:02 AM   #3
Rocking4Epilepsy
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Default Terms used in Epilepsy

Terms used in Epilepsy



Adjunctive
Additional, add on. As in adjunct or adjunctive therapy, concerning a drug which is added to an existing medication.

Affect
Mood, level of emotional responsiveness.

Affective
Concerning or influencing mood and level of responsiveness.

Amygdala
Part of the limbic system of the brain. Seizures arising in this area include a rising sensation in the stomach, nausea, movements of the mouth, chewing, fear, panic, and flushing of the face and other autonomic symptoms.

Anoxia
Lack of oxygen.

Aphasia
Defect in or loss of the ability to express oneself using speech, writing, or signs, or to comprehend spoken or written language as a result of injury to or disease of the brain's speech centers.
Apnea
Cessation of breathing.

Apraxia
Loss of ability to carry out familiar, purposeful movements, especially inability to make proper use of an object.

Arteriovenous malformation (AVM)
A tangle of blood vessels in the brain, may produce seizures when they bleed.

Aspartate
An excitatory neurotransmitter.

Autoinduction
A process whereby the body learns to metabolize (process) an antiepileptic drug, such as carbamazepine (Tegretol) more effectively over time, requiring a higher dose to control seizures than was initially needed.

Automatism
Involuntary, undirected movements during complex partial seizures and atypical absence seizures.

Autonomic nervous system
System of the brain that controls key bodily functions not under conscious control, such as heartbeat, breathing, sweating. System may be affected by seizures.

Blood level
The concentration or amount of antiepileptic or other drug present in the bloodstream, usually expressed as micrograms or nanograms per milliliter.

Catamenial epilepsy
Epilepsy in which there is a tendency for a woman's seizures to occur primarily at the time of menstruation.

Clinical trials
Multi-phased, organized systems of testing new drugs in human populations, and subsequent analysis of the results.

Compliance
Refers to patient adherence to physician directions for taking antiepileptic drugs.

Computerized tomography (CT)
A scanning method that uses X-rays and computers to create images of the internal structure of the brain, produced at different levels, in a series of 'slices.'

Convulsive syncope
A seizure caused by fainting in which the supply of oxygen to the brain is limited.

Corticography
Direct recordings of brain activity from the surface of the cortex, usually during brain surgery.

Cryptogenic
Of unknown origin.

Cyanosis
A blueish discoloration, particularly of the skin and mucous membranes, due to lack of oxygen.

Dose-related effect
A negative side effect produced by high dosage of an antiepileptic or other type of drug.

Dysmemnesia
Impaired memory.

Dysphasia
Difficulty in swallowing.

Encephalopathy
Any degenerative disease of the brain.

Epidural electrode placement
Placement of electrodes on or outside the dura mater, a membrane covering the surface of the brain.

Epilepsia partialis continua
A prolonged simple partial seizure affecting movement.

Epileptiform
Appearing to be like epilepsy, as in an epileptiform discharge on an EEG.

Epileptogenic
Causing epilepsy or an epileptic response.

Focal seizure
Older term for partial seizure.

Focus
Identified area of the brain from which partial seizures arise.
Gamma aminobutyric acid (GABA)
A neurotransmitter which inhibits neuronal firing.

Generic
The name of the drug as opposed to a brand name developed by the manufacturer.

Glutamate
An excitatory neurotransmitter.

Gustatory
Related to the sense of taste.

Half-life
Length of time needed for half of a substance to decay or be metabolized. In epilepsy, refers to the half-life of an antiepileptic drug in the body.

Hemiplegia
Paralysis of one side of the body.

Hyperventilation
Rapid, deep breathing. Use in EEG testing may produce abnormalities or even a seizure.

Hypsarrhythmia
A distinctive EEG pattern associated with infantile spasms in babies.

Ictal
Pertaining to, characterized by, or caused by an epileptic seizure.

Idiopathic
Of unknown origin or cause.

Idiosyncratic reaction
With reference to medication side effects, describes unusual sensitivity or an allergic-like reaction to a drug which others take without problems.

Intractable
Not responding to treatment.

Kindling
A procedure used in animals in which unprovoked seizures (epilepsy) can be produced by a series of provoked seizures.

Landau-Kleffner syndrome
A rare, childhood condition producing seizures and progressive loss of the ability to speak.
Magnetic resonance imaging
An imaging method using magnets instead of X-rays. Produces detailed pictures of the internal structure of the brain.

Mechanism of action
How a drug or physical process works in the body.

Minor motor seizure
An older term for a partial seizure affecting movement.

Monotherapy
Treatment with a single drug.

Neoplasia
Formation of new and abnormal cell growth.

Olfactory
Related to the sense of smell.

Onset
Beginning. As in age of onset, referring to the age at which the condition began.

Paroxysmal
A sudden outburst or eruption.

Pharmacokinetics
The behavior of drugs in the body, specifically rates of absorption, achievement of peak levels, and metabolism.

Photic stimulation
Stimulation of the brain through intense or flashing light or alternating patterns of light and dark.

Positron emission tomography (PET)
An imaging technique that shows metabolic activity in the brain.

Prodromal
Indicating the onset of a disease. In epilepsy, indicating the onset of a seizure.

Prognosis
The expected course or outlook for a given medical illness.

Psychic (as in psychic symptoms)
Referring to emotional, intellectual or mood effects.

Rasmussen's encephalitis
A rare form of epilepsy affecting one whole hemisphere of the brain; progressive in nature.

Refractory
Difficult to treat, unresponsive or of limited response to medication.

Single-photon emission computerized tomography
(SPECT) An imaging technique to measure blood flow in the brain.

Slowing
A type of EEG wave associated with lower levels of arousal, sleepiness, drugs, and the after effects of seizures.

Somatosensory
Related to bodily sensation.

Steady state
A state of balance or equilibrium. Refers to drug levels which stay steady so long as the rate of metabolism is balanced by continued intake of enough medication to replace what has been used up.

Sturge-Weber syndrome
A blood vessel disorder affecting the face, eyes and brain, also associated with seizures.

Subdural electrode placement
Placement of electrodes deep in the brain.

Symptomatic
A condition arising out of a specific cause.

Therapeutic range
Blood levels at which a drug can be expected to produce a beneficial effect without toxicity.

Transient hemiplegia
Temporary paralysis of one side of the body.

Trough level
In blood level monitoring of antiepileptic drugs, the minimum level of drug in the blood prior to absorption of the next dose.

Tuberous sclerosis
A genetic condition in which tumors arise in the brain, eyes, skin, and internal organs, producing seizures. Mental retardation may be associated with the condition.

Versive
Turning as in involuntary turning during a seizure.

Vertigo
Dizziness.
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Old 10-03-2006, 03:44 PM   #4
Ellie
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Default Pasted From "How To Disable Flash" Thread

Please review THIS thread for tips to disable flash (animations, images, etc. that may trigger a photosensitive seizure).

Here are quotes I pulled from other threads:

Thanks to Swift
Quote:
In IE 6, you can turn off graphics by:

i. Select 'Internet Options' from the Tools menu.
ii. Select the 'Advanced' tab
iii. Scroll down to 'Multimedia', and click on the box next to 'show pictures' so that there isn't a tick in it.

(It's also useful if you're on dial-up - makes pages load quicker).

Netscape 8.1:

i. Select 'Options' from the Tools menu.
ii. Click on 'Site Controls'
iii. 'Add site' and then type 'braintalk2.org' (left hand bottom corner).
iv. Select the newly appeared 'braintalk2.org', and then on the right click on the box next to 'Allow images to be displayed'.

Firefox:

i. Select 'Options' from the Tools menu.
ii. Select the 'Content' tab.
iii. Click on the box next to 'load Images' so that it doesn't have a tick on.

I realise this only works for those internet browsers rather than the whole of windows - but for those who can tolerate static graphics it may be a helpful half way house.
Thanks to ZombieSlayer
Quote:
I found a flash uninstaller program and to make it easier to find I put it up on my site

http://www.thunder65.com/annie/unins...ash_player.exe

Make sure nothing is running when you use the installer (only explorer.exe should be running). Might want to boot into safe mode then run the uninstaller.

Also there is a registry fix to implement (not sure if it's needed after the uninstaller is done) that I'll post if the uninstaller doesn't do everything you need it to do
Thanks to Annie for the information below, and for pointing out where this information was (Computers and Technology).

Quote:
i am the most vocal person here who has photosensitive seizures, so i guess i am the one to answer here.

all animated graphics are bad for someone with photosensitivity and a low seizure threshold. all graphics are bad. all graphics trigger seizures in people who have a low enough seizure threshold. animated graphics trigger them faster.

the internet is full of graphics and animated graphics.

what to do? the person with the problem can turn them all off in their own browser.

we had instructions for doing this up as a sticky in the old epilepsy forum, which i have someplace, but they are outdated since they were mostly for windows 98. i need to update them and post them again.

rule of thumb is that if you can tolerate a TV without having an instant seizure most animated graphics won't bother you. i cannot be in the same room with a TV without having status seizures. makes being in hospitals interesting.

the most important thing is to be careful about changing the refresh rate on your monitor. it is possible to do it wrong and have your monitor burst into flames. do not believe anyone who says they know how to do this safely. they may not.

for a discussion of how to eliminate flash from windows XP, check the computer forum here. dorry and zombie slayer have been helping me configure my computer for about three forums.

i have everything turned off. animations. all graphics. all color. all fonts. everything.

and when all else fails, i keep a large piece of cardboard handy to cover the screen.
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Old 12-11-2008, 11:10 PM   #5
teri3
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Default CA DMV and seizures

Hi I recently was reported to the DMV by my doctor after having a seizure. Do you know the process that occurs after the DMV sends out paperwork and my doctor and I completed then mailed it back. How long does it take CA DMV to make a decision and what usually happens? If license is restricted what happens after the restriction time period? thank you
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